We went into hospital Wednesday afternoon....over the next couple days the antibiotics were changed and levels adjusted in order to kill the infection. We were told we could go home on antibiotics Saturday if the blood cultures came back clean. We were very hopeful because we really wanted to avoid having to put Hunter through surgery to get a new line.
The antibiotics did what they always do...they caused Hunter (who already has chronic diarrhea), to have diarrhea! If you remember Hunter sometimes has a rectal prolapse when he stools and we have to push it back into him. Well since he's been stooling even more due to the antibiotics the prolapse has been coming out more frequently. We've been able to put it back in but today it came out and stayed out. Hunter needs to relax in order for it to go back in but today every time I tried to push it in he would push back. They gave Hunter a dose of Morphine which did absolutely nothing to relax him. They gave him a second dose....still not sedated....they gave him Ketamine (sp?)...knocked him out cold....the prolapse was put back in and Hunter had a well deserved nap.....
Hunter's prolapse came out again in the afternoon....doctors were notified etc and they want him sedated basically until Monday....we are not OK with this.....but the flip side is the prolapse stays out and can dry out or stop blood flow to the area which causes another list of problems! So again they gave him some Morphine which calmed him a little but not enough to put the prolapse back in. They gave him another sedative (can't remember the name right now) and it helped a little....the doctor tried putting the prolapse back in and it eventually went. We are hoping it stays in over night so he doesn't have to be sedated for the next couple days....
As for the line infection.....it didn't grow anything after 24 hours which is very hopeful that the antibiotic is clearing it.....and also means Hunter won't have to go in for surgery. When we can come home Hunter will be on antibiotics for the standard two weeks......we are just waiting to hear if the antibiotic levels are therapeutic or if they need to be adjusted....and of course we are waiting to hear what will happen with the prolapse.
Hunter Thomas Reeve was born on March 12, 2009 at 2:38 in the morning at St. Thomas Elgin General Hospital. Hunter weighed 6 pounds and was four weeks early but appeared to be a healthy baby boy.Although Hunter was eating well he was steadily losing weight. Three days after his birth Hunter was released from the hospital and made the trip home. Due to the weight loss Hunter was brought back to the St. Thomas hospital and after a series of tests it was found that Hunter was severely dehydrated. An IV line was started in the top of Hunter’s head because he was too dehydrated for the nurses to find veins anywhere else in his body.Hunter was rushed by ambulance to the Children’s Hospital in London, where he stayed on the IV while doctors and nurses diligently tried to determine what was causing the dehydration. By this time Hunter was down to almost four pounds and struggling to stay alive. Hunter fought hard (even managing to rip out the lines that the nurses kept putting in) and was stabilized thanks to the staff in the Pediatric Critical Care Unit. Without their care Hunter would not have lived through the night.After exhausting all of the non invasive tests, doctors from many specialty units were brought in to try and find out what was causing Hunter’s illness. Dr. Bax of the Pediatric Gastroenterology team was brought in, and in Hunter’s first week of life, he had his first surgery. A sample of Hunter’s small intestine was obtained through a biopsy and sent off for analysis. This is a rare procedure to have done on a baby and is not part of routine testing. Miraculously enough, this procedure determined the cause of Hunter’s decline: his small intestine was not absorbing any nutrients from his food. In fact, Hunter was outputting more than he was taking in.Hunter was diagnosed with an extremely rare and potentially life threatening disease of his intestines called Microvillus Inclusion Disease (MID). This disease prevents Hunter from absorbing any nutrients through his small intestine making him completely dependent on Total Parenteral Nutrition (TPN). TPN is very hard on Hunter’s liver but the only other option is a small intestine transplant.At first it seemed like a very grim prognosis as the complications with transplant are many. But there is hope: an experimental treatment called Omegaven. Omegaven couples Omega 3 fatty acids with TPN which greatly reduces the risk of liver damage and may assist in its repair. Unfortunately, Omegaven is not currently covered by the Ontario Health Insurance Plan (OHIP) or independent insurance companies.This disease only affects one in five million people. Hunter is the twelfth known person suffering from this disorder in North America right now. Currently there is no cure for Microvillus Inclusion Disease. Hunter needs constant medical care and the cost can be overwhelming to a family. There is very little coverage for in home support for families battling MID; as this disease is rare it is not typically covered by OHIP. Although Hunter’s Omegaven is currently being paid for it is unknown how long it will remain covered and what challenges this little boy will face in the future. Because MID is such a rare disease more research is needed to find other treatment options that are not as detrimental to the health of those affected. Hopefully someday this research will lead to a cure. Hunter needs your help to stay home. With your support we hope to make this dream a reality. Please help – because every baby deserves to grow up.
Saturday, November 27, 2010
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment